csf leak

[kristi365]

My 2-year-old son just had decompression surgery 2 weeks ago, the doctor did have to do a dura patch. After the surgery he need to have CSF fluid removed from the surgical site twice and a compression bandage applied. 6 days ago the latest compression bandage was removed and we were told to only come back in if we saw CSF fluid leaking form the bubble on the site. The doctor's hope is that the leak will stop and his body will absorb the fluid. Over the past 6 days the bubble has gotten bigger (about the size of a small plum) but there hasn't been any leaks. My questions are: how often does this sort of thing happen, should I be really nervous and how likely are we to need another surgery?

Thank you!
Kristi

[Noahbair]

What were you child's symptoms?  We have a child with Gross motor delays and he does not sleep through the night.  We are going to the Mayo Clinic again next Monday they will be doing a MRI.  Our hope as parents is that they will figure out what is going on with our child.  We are definetly really scared.  
Shelley

[youngwife]

My daughter's neurosurgeon used a surgical drain, so I am not familiar with this type of situation.  But, I would watch this bubble very close.  A friend of mine has a child that developed a CSF infection after a bubble that sounds similiar to your son's (her son has a shunt).  

Please, if he starts having fever or head pain, rush him to the ER!!  It can turn serious very quickly.  My friend almost went back home because her son got feeling better, but thankfully she didn't because her Mommy's instinct told her it would be better to rule out a problem.  He had two surgeries and ended up staying about 11 days in the hospital.

I would call the doctor's office to let them know what is going on, too.

HTH,
Rebecca